More info about the beginning

As far as my comment goes about getting to that later in my first post regarding not being able to eat healthy - My eating habits are drastically changed since February 2010.  I had been taking indomethacin since the end of November 2009.  This medication was the only thing that gave me days at a time of being pain free.  Unfortunately it wreaked havoc in my GI system.  It caused ulcerations throughout the GI tract so bad initially I was diagnosed as having Crohn's disease triggered by the indomethacin, then eventually it was decided the medication itself was what caused all of the ulcerations.  I could not eat without agony.  I spent a couple months basically living off soup or baby food.  I was hospitalized twice and almost had a hemicolectomy.  Boy am I glad I avoided that!  Also added to the first hospitalization my mother was on her way to pick up my oldest daughter and they were coming to visit me in the hospital when she was hit by a drunk/high driver and killed instantly.  He still has not gone to trial by the way.  Medically and mentally I am not the same.  I can never take any type of anti-inflammatory medication again or aspirin.  I love to eat lots of vegetables but unfortunately that causes me problems now ever since the damage caused by indomethacin. That is why I am tired of medications and want to go ahead with the stimulator.  I am hoping to get off medications.  Aside from the head pain I have always been essentially healthy.  I have had migraines since age 12 but they would only last a day and I had one maybe once or twice a month until I woke up one day with a headache that would not go away no matter what I did.  I don't want medications to mess me up anymore.  I cannot live without pain medication at this time, however.  If I did not take medications I would be completely nonfunctional.  The medications dull the pain enough so that I can still do some of what I need or want to do, but sadly not anywhere near what I want to be doing.   I have to limit any time going out into public, driving, being in noisy environment (as much as possible having kids at home!), etc. because afterwards I eventually end up lying on the couch with my ice pack and crying until I go to sleep.   This includes birthday parties, holidays, etc.  I really would like to get back to a normal life.  Hopefully I will not have to fight too hard with the insurance company to get the trial stimulator.

What the...

Ok, so now something totally different is happening.  Now the right side of my head has been hurting this afternoon.  Strangely enough the right side of my head hurt and my left cheek was red and hot.  What is going on with my crazy body??  Tonight however I am back to the same ol' headache on the left and red hot cheek.  I wonder if I need to ask to have leads placed on both sides if I actually get to have the stimulator placed?  Now I am wondering a little bit about my diagnosis.  I have read a couple of articles about a person having hemicrania continua with side shift, but it seems to be very rare.  Up until now I have never had a doubt.  All the symptoms matched.  Who knows?

New Doctor

Well I got to meet the doctor in NC.  He is awesome!  He even talked about how there is about a 100% chance of needing revision because of lead migration and he tries to secure the leads very, very well.  He is really nice and wants to do the surgery but says my biggest problem will be getting the insurance company to pay.  He is submitting for preauthorization for a trial implant so we are going from there.  I am pretty sure I will have to appeal.  I am trying to stay hopeful though!  Everyone there was very friendly and nice.  I really like the doctor and staff.  I actually talked to a fellow there and she answered questions I thought about after the doctor had left the room.  She was very helpful and knowledgeable also.  I will have to have some hair shaved off but I don't really care.  Heck I would shave my whole head if it meant relief from this pain!

Addicted to ice packs

Is it a bad thing to be addicted to???  It seems I can only go a couple hours without using one for the past few weeks.  I guess I jinxed myself saying I didn't have bad days all of the time.  I need an ice pack that stays attached to my head all day long!  Can't wait to meet with the new doc and see if he can help.

Going to NC

I finally have my appointment to see the dr in North Carolina that does the occipital nerve stimulator implant.  I am so excited!!!  Only now I have to wait a month....

Ironically I am having a bad pain day today :-(

Bad days

Yesterday was a bad day for the HC.  I spent the day on the couch feeling like I would pass out every time I stood up.  Fortunately I do not have that many days like yesterday, but unfortunately I cannot control when they come whether it is inconvenient for other people or not.  If I did have days like those all of the time I don't think I would be so tolerant of unsympathetic people.  They suck!!!

Things I have tried

Well I have been making a list to bring to my doctor's office with me tomorrow of all the things I have tried for the head pain since 2009.  I was surprised when I got to the end because I had forgotten how many things I had tried.  I am quite sure I left things out though since my memory isn't all it used to be.  Anyway, just thought I would share my list. 

On an exciting note at this appointment I am bringing this list and a referral sheet for a doctor I found in North Carolina that does the occipital nerve stimulator implant!!!!  Hopefully my dr can get me referred and I can get in to see him soon.

The list:

Antibiotics given by Urgent Care doctor when headache first started for "sinus" problems, although no sinus symptoms present

Ice

Heat

Triptans

Excedrin

Advil/Motrin

Aleve

Tylenol

Aspirin

Migranal

Topamax

Steroid Dosepak

Botox injections

Imitrex injection

Chiropractic care

Indomethacin - the only relief but caused GI ulcers, at first diagnosed with Crohn's disease by Gastroenterologist thought to have been triggered by the medication

TMJ dysfunction treatments:  bite split and bite splint adjustments, muscle relaxers, Valium

Radiofrequency thermoneurolysis for temporal tendinitis

Elavil (amitriptyline)

Panlor DC

Lortab and Lorcet

Esgic Plus

Ergonovine - caused severe chest pain, constriction/coronary artery spasm per Cardiologist

Zonegran

Trileptal

Nubain

Occipital nerve blocks

Gone to Eye Doctor yearly to make sure eye strain not a factor

HeadOn OTC topical treatment

GelStat migraine OTC sublingual

MigreLief (magnesium, riboflavin, feverfew)

MigraDefense (riboflavin, magnesium, feverfew, guarana, butterbur, white willow, griffonia, actisorb [black pepper extract, ginger root extract, rosemary leaf extract, turmeric extract and cayenne extract]

January 25, 2012 edit:
Now I have also tried these medications:
Carbamazepine (Tegretol) - did nothing
Nucynta - did nothing at several different strengths
Celebrex - did nothing
Methadone (severe nausea and vomiting and inability to stay awake) but did nothing for the pain
Diamox (side effects of tingling hands and feet, nausea and vomiting, severe drowsiness) two week trial ending today- no effect whatsoever on my pain
Kadian (my present pain management) at least takes the edge off pain so I can get out of bed

I also had a cervical epidural which actually helped symptoms in right hand and arm that I thought were carpal tunnel, but no effect on head pain at all except for reduced pain that lasted 3-4 hours